Death is something that everyone will experience, yet many of us are afraid to talk about it.
Whilst in post, Andrew Thorns, former Director of Medicine at Pilgrims Hospices, explored why this might be and shared what can be gained from having this important conversation.
Death is something we don’t really think about, although I suppose I do as I work with dying people all the time and have done for more than 20 years. But why don’t we think and talk about death? Because we’re fearful of what it will be like? Because we are not sure what happens after? Because it challenges our beliefs, or it causes pain to those we love?
All are very relevant concerns and there are many others, but perhaps there is something deeper. Perhaps there is something as part of our evolution as a species, something within our make-up, that means as soon as any connection to death comes our way our behaviour and attitudes change. So instead of thinking ahead, planning, deciding what is important to us and making rational decisions about our healthcare, we put it all on the back burner.
We need to trust that talking and thinking about death doesn’t make death happen. When we’ve overcome this, the biggest fear, what more is there to worry about? Once we have planned for the worst, we can continue to hope for and achieve the best.
Dr Andrew Thorns
Sheldon Soloman and death anxiety
These thoughts had often gone through my mind, and were reinforced when reading the work of Sheldon Solomon, a US social psychologist. He gave an excellent talk at the Hospice UK conference in 2015. Briefly, his theory goes: According to Darwin’s Theory of Evolution, in order to evolve as a species we needed to strive to stay alive. However, at some point in this evolution we became aware that we are going to die and there is nothing we can do to avoid this. For our early predecessors, this would have caused terror and fear, and they were left trying to manage these feelings.
They did this, and we continue to do so, in various ways:
We believe that some piece of ourself can live on after death. This manifests either as part of a religious faith, where one believes they will gain immortality in an afterlife, or by leaving behind a legacy, for example through their children or by recording their life story before they die.
We look for ways to achieve a life that has meaning and value.
We keep thoughts of death far from the front of our minds. Distracting ourselves with other day to day activites: ‘tranquilising with trivia’, as Solomon puts it.
Solomon and his colleagues confirmed this in a series of experiments. When interviewing people in front of cemeteries, funeral homes and other locations that evoke reminders of death, their behaviour and attitudes changed – even when the triggers were subliminal, with the person unaware of them. These behavioural changes were wide-ranging, including:
Sticking with likeminded individuals and distancing themselves from others
Support for war and suicide bombers
Change in voting preferences towards previously unpopular politicians
Distancing themselves from animals and nature
Overall, subjects in the experiment tended to prefer things that were familiar to them, and they distanced themselves from the thought of being close to animals.
How can these insights help us? We should consider it from three perspectives: individuals, society and the hospice movement.
How can we start to talk about death?
As individuals, we need to recognise that if we can get over this reflex fear of all things associated with death, then we can live better lives – we need to trust that talking and thinking about death doesn’t make death happen. When we’ve overcome this, the biggest fear, what more is there to worry about? Once we have planned for the worst, we can continue to hope for and achieve the best.
After all, it’s not just about a good death, but also living well until you die.
Dr Andrew Thorns
If this approach to the taboo of death became embedded in society, we would all benefit from the open conversations that would result. Decisions about healthcare and treatment would be more in line with individual peoples’ wishes This would remove pressure from their families who, in turn, would be better supported. Resources could be utilised more effectively and directed at what was most important to the individual. The fear associated with the word ‘hospice’ would disappear, and patients needing hospice support would be referred earlier, enabling them to experience greater benefit.
The importance of hospice care
So, what do hospices do? Despite many people thinking that they are places where people spend the last few days of their lives they actually do much more than this. You may have heard that hospices can also improve comfort, ease symptoms and support families through difficult times. This they certainly do, but their most important and impressive achievement is enabling people to get over the fear of death and carry on living well. How do hospices do this? By helping to build a container of care around that person and their family. Why is this needed? When faced with the horrible, dark fear of death, the frightened soul or spirit tries, quite reasonably, to keep away from it.
Rather than this fearful soul left to confront this daunting prospect alone, a container of care is needed that fits carefully to that person’s needs and enables a smoother journey and adjustment to what is ahead. A hospice can build this around the person and those close to them, so that they can face up to the initial fear and keep on living well despite this knowledge.
After all, it’s not just about a good death, but also living well until you die.
Andrew Thorns
Andrew Thorns is Director of Medicine at Pilgrims Hospices, the largest hospice charity in east Kent, UK. He strongly believes in the importance of research and skilled communication to improve patient care.
The views reflected here are his own.
There’s much more to death than we think; what if it isn’t just an ending, but an event we can plan for? Thinking beyond the four walls of hospices and hospitals, we have the chance to approach it with confidence and plan a good death. After Wards is a collection of insights and ideas from people who can help us all to re-imagine this essential part of life, and to live well until we die.
3rd August 2018
In conversation with Dr Kathryn Mannix
Dr Kathryn Mannix, author of With the End in Mind, was in conversation with Pilgrims Hospices on 16 May 2018 as part of Dying Matters Awareness Week. Here, Kathryn shares her views on being more open about death and dying, explaining how the healthcare profession can help.
Tell us a bit about your background.
I began in hospital medicine and then oncology. In oncology, I discovered that I was fascinated by the challenge of managing symptoms for people who would not be cured. I began to find out about hospices, of which there were only a few nationally. Then, a new hospice was built near my home. I wrote to ask about working there and was invited for an interview. So in a really haphazard manner, I became a trainee in palliative medicine. This was before the term ‘palliative medicine’ had been invented – that makes me feel old!
With the End in Mind is your first book. Why did you write it?
.One of the stories in the book is about how I heard my first hospice consultant describe normal, gentle human dying to a very frightened patient. It had a profound effect both on her (she was completely calmed, and remained so until she died) and on me, who had seen many deaths but hadn’t stood back enough to notice the recognisable pattern he was describing. This conversation is one I went on to have thousands of times with my own patients, and it is always a comfort and consolation to patients and families.
The book is an attempt to take that comfort and consolation to many more people.
The way we talk about death has changed. We’re reluctant to broach it, and we have started to use ‘acceptable’ words that are airbrushing mortality out of our conversations – ‘passed away’; ‘lost’; ‘dear departed’. It’s creeping into media reporting, too. It’s starting to feel impolite to use the D-words. We must not allow that to happen.
Dr Kathryn Mannix
Who would benefit from reading the book?
Well, it’s really for anyone who has ever wondered about what dying will be like, or who worries about it. From the feedback I have had, it’s been a helpful read for many people. I’ve had messages from dying people to tell me that they feel less afraid (and they are making their families read it!)
I’ve had many messages from people who had seen someone die but had not really understood what they were seeing and hearing: they misinterpreted some of the changes in breathing, or some of the noises they heard, as pain or distress. They have been comforted and very relieved to understand the process of dying better, and to realise that their beloved dying person was almost certainly not suffering and was probably deeply unconscious, relaxed and unaware. It’s fantastic to hear from people who have felt such consolation from reading With the End in Mind.
When and why did people stop being able to talk comfortably about death and dying?
It’s been a drift rather than an event, I think. In the developed world, life expectancy increased so markedly in the 20th century that many people now reach their 50s and 60s before they see anyone die. One hundred years ago, people saw siblings die during childhood, and their parents’ generation died while people were in their 20s and 30s; people were more familiar with the process. Death often took place at home.
As it has become less familiar, it has also become more fearsome. We don’t see normal dying in our real lives, but we do see TV and Hollywood dramatic dying, and we are starting to assume that newspaper articles about difficult deaths, and high-drama soap opera deaths, represent normal dying.
Has language played a part? What needs to change?
The way we talk about death has changed. We’re reluctant to broach it, and we have started to use ‘acceptable’ words that are airbrushing mortality out of our conversations – ‘passed away’; ‘lost’; ‘dear departed’. It’s creeping into media reporting, too. It’s starting to feel impolite to use the D-words. We must not allow that to happen.
If we don’t use the words, we will lose the language we need to describe the events we want people to understand. We need richer, not poorer, vocabulary about this once-in-a-lifetime process that awaits us all.
What does ‘dying well’ mean?
Dying ‘well’ is a concept that includes being as aware of the imminence of death as the patient wishes: most cope best by being fully informed, but a few people choose denial as their way to remain emotionally intact. Dying well includes physical symptom control; emotional calm; social peace of mind by preparing loved ones and getting a chance to say farewell, thank you, I love you, I’m sorry, I forgive you. For many it also includes the rites and rituals of their faith.
I often talk to my patients about ‘dying safely’. Together, we discuss the process of dying, and use that understanding to decide where the person would like to be and the practicalities of enabling them to be there. We discuss whether home is practicable, and if not we consider alternatives. In addition, we plan symptom control, family support, decisions like whether there are circumstances in which they would move to hospital; we write a clear plan with the patient’s preferences at its core.
Dying well seems to be very closely related to being able to remain emotionally intact as death approaches. Honesty and clarity seem to help that far more than pretending it isn’t happening.
When I’m talking to patients, or teaching, I hear myself using phrases I have adopted from other people. It’s part of our apprenticeship to learn from our masters, and I have been lucky to have many.
Dr Kathryn Mannix
How have your ideas and views been received?
I’ve been delighted and reassured by the positive response to the book, from the public and from fellow professionals.
What can healthcare professionals and specialists learn from your book?
I’ve tried to include dialogue that might help people to tackle similar conversations. When I’m talking to patients, or teaching, I hear myself using phrases I have adopted from other people. It’s part of our apprenticeship to learn from our masters, and I have been lucky to have many. In the same way, I’d welcome people to take any expressions used in the book and adapt them to use as their own.
Cate Russell, former Pilgrims Hospices Chief Executive, with Dr Kathryn Mannix and Andrew Thorns, former Pilgrims Hospices Medical Director
My other hope is that the stories distil the wisdom of approaching dying with understanding and access to good information; the repetitive theme in the stories is of human resilience. If we offer honest, compassionate answers at a pace that suits each patient and their family, then their natural human resilience will allow them to deal with this difficult situation as with previous challenges they have met. Humans are amazing, and often at their best at this really challenging time of life.
I’m also passionate about the idea that we who accompany the dying are ‘midwifing’ the experience: we should be explaining in advance, and then pointing out as the process of dying evolves, that the things we were expecting are happening; that this is usual; that this is ‘safe,’ whilst being prepared to take rapid action if the person experiences discomfort or distress. In this way, not only will each death be well-managed, but also the survivors enter their bereavement having understood the process and witnessed a normal and comfortable death.
What are the biggest lessons that any of us can take away?
That’s a big question! I think we who understand dying have a duty to restore the understanding of death to the public domain. It’s a public health issue, so although we are usually working on a patient-by-patient basis in palliative care, we also need things like Dying Matters to remind us all of the important message of understanding dying while we are still healthy. There are lots of organisations, allied via Dying Matters, working on public awareness, and we should really encourage this message.
What have been the most important lessons for you during your career and whilst writing?
I think we must trust human resilience, and give people access to good information with compassion. This applies whether we are telling a particular person that their life-expectancy is limited, or whether we are talking about a public information campaign about normal human dying.
Hearing dying described to a patient that first time by my skilled and compassionate consultant was a life-changing moment for me. Other stories that have challenged and changed me are also included in the book, like the couple who were each protecting each other from the truth of the wife’s terminal illness because the professionals hadn’t included them both in the conversation when the diagnosis was discussed; and the patient whose physical pain was a manifestation of his inner torment and distress.
I’ve seen these situations many times over the years; I’m getting better at recognising patterns and I feel it’s part of our professional duty to share our wisdom. That’s why I’ve written this book.
How can Pilgrims contribute to our understanding and help push the conversation forward?
Holding a public meeting was a great thing to do, and the huge demand for tickets really confirmed that. I enjoyed a great discussion with you all in Canterbury.
I think that palliative care charities can really contribute to public understanding. We’re talking about something we know very well from personal experience. We also have access to the remarkable research that is being generated about managing symptoms, planning ahead, emotional and spiritual support, family coping strategies and many more considerations.
Getting more air time on TV and radio (Joan Bakewell’s Radio 4 series We Need to Talk About Death was superb) speaks to one generation, but we need social media campaigns to reach different people, too. It’s a huge task. Raising our profiles and taking some risks will be necessary if we are to make a difference.
There’s much more to death than we think; what if it isn’t just an ending, but an event we can plan for? Thinking beyond the four walls of hospices and hospitals, we have the chance to approach it with confidence and plan a good death. After Wards is a collection of insights and ideas from people who can help us all to re-imagine this essential part of life, and to live well until we die.
26th July 2018
Pilgrims’ Death Cafe is full of life
Pilgrims Hospices has hosted Death Cafes at its education centre in Canterbury, around east Kent and virtually over the past few years.
The Death Cafe movement was set up in 2011 by Jon Underwoodfrom his home in East London. Jon believed that a Death Café could be a safe and informal space for people to come together and talk about death over coffee and cake. This idea took off and has since spread around the world; perhaps its popularity is due to how often we avoid talking about death as part of our daily lives.
At our Death Cafes, the Education team serves coffee, tea and cake, and after a short introduction, everyone listens to each other talk – there is no set agenda or format.
Pilgrims Education team have hosted Death Cafes around east Kent, with the most popular location being the Ann Robertson Centre, a Pilgrims-run meeting and training centre situated next-door to Pilgrims Hospice Canterbury.
It was fascinating. I loved the mix of people, all ages and backgrounds and careers.
Karen Bartholomew, who attended her first Death Cafe at Pilgrims in 2017
The first Pilgrims Death Cafe was part of Dying Matters Awareness Week in 2017, a campaign to help enable people to talk openly and honestly about death.
Chance for an ‘open discussion’
Pilgrims’ Education team explained: “It’s important for Pilgrims to be centred in the local community, not just providing care and support to patients and their families. We want to engage with all local people to openly encourage discussion on topics like death.
“When the first posters went up and there was a mixed reaction. Some people found the name ‘Death Cafe’ too morbid or too shocking, others thought that it was a brilliant idea; either way, it seemed that this kind of discussion was very much needed in our community.
“We were just asking people to turn up and talk together over coffee and cake. The only thing we were unsure of was whether anyone would actually want to come; now we often find ourselves with a room full of people all animatedly chatting, laughing and expressing themselves. We receive outstandingly positive feedback, everyone is keen to come back. ”
Conversation, coffee and cake
Local playwright Karen Bartholomew, writer of God’s Waiting Room – a beautiful, moving and very funny play about death and loss within a family – shared her experience of attending her first Death Cafe. She said, “It was fascinating. I loved the mix of people, all ages and backgrounds and careers. I was most interested in older people talking so frankly about their concerns of dying alone. Death did not worry them but being alone did. As a woman in her forties and with my family still around me at this point in my life, I have not questioned that so closely and it made me realise how some older people might be feeling.
Death is a part of our lives; I think it’s time we talked about it.
Karen
“I felt enlivened, actually. The premise of a Death Café is a hard sell; I know this from the title of my play. Yet still, Death Cafés are whatever you want them to be. I found I learnt more about people, respect, humanity and community in one short morning than I have in any other environment, other than perhaps a theatre. It’s as much or as little as you want to share or listen to. In a world of social media the way we communicate is changing, so I found this a healthy return to people just talking. Loved it!
“Death is a part of our lives; I think it’s time we talked about it more.”
We host Time to Talk community events throughout the year for the general public, aiming to open up the conversation about death and dying; with film screenings, poetry readings and Death Cafes and much more, there’s something for everyone.
In 2014, Michel’s wife, Eva, died after a long battle with multiple myeloma, a form of bone marrow cancer that is unpredictable and different for everyone. Before Eva’s illness Michel had only ever written fiction, but shortly before her death he began to write poetry. These poems – three written before Eva died and the rest afterwards – form his collection Undying: A Love Story (2016), which he read from at the event.
All I can do, in what remains of my brief time, is mention, to whoever cares to listen, that a woman once existed, who was kind and beautiful and brave, and I will not forget how the world was altered, beyond recognition, when we met.
Michel Faber
Michel’s poems chronicle their journey as a couple, from Eva’s initial diagnosis until after her death. In [indecipherable] kappa he recalls being ‘sick with terror’ when they returned from the local clinic after receiving the news. A final poem, Purring, reflects on the night that Eva died. What comes across most strongly throughout the collection is the enduring nature of love.
Asked what had made this experience expressible as poetry, Michel said:
“The poems came to me when Eva died; it seemed odd not to share them if they would resonate with others. They are unguarded and direct, so turning them into fiction felt disrespectful. Eva’s death gave rise to poetry, but I don’t feel I will write poetry again.”
After the reading, Dr Stella Bolakichaired a panel discussion and Q&A. Stella is a Senior Lecturer at the University whose research interests include illness narratives and how the arts can help medicine to be more humane. She was joined by Theresa Rowlstone from the clinical team at Pilgrims.
Michel shared some of Eva’s own artwork produced in the last years of her life. She was a painter, photographer and writer, a legacy that Michel is keen for others to recognise. Her work included photography combined with medical scans of her body, and a poem – The Beauty of Beeping – about the ‘machines who sing all the time’ during chemotherapy treatment. Michel highlighted how Eva was ‘most creative when she was most disabled’:
“When you’re a creative person you tend to procrastinate, but Eva didn’t have many more tomorrows so she was intensely creative in the late stages.”
He also highlighted the importance of being creative at milestones like birth and death.
Art therapy at Pilgrims allows people to trace their journey through drawing or painting. Creative writing and memory boxes are also a practical way for people to tell their story and leave a legacy.
Theresa Rowlstone, Advanced Nurse Practitioner at Pilgrims Hospices
Stella asked whether hospice patients feel a need to tell their story, too. Theresa agreed:
“Art therapy at Pilgrims allows people to trace their journey through drawing or painting. Creative writing and memory boxes are also a practical way for people to tell their story and leave a legacy.”
In response, an audience member shared a story about their friend who had passed away at Pilgrims Hospice Ashford. They had never painted before, but experienced a beautiful spiritual journey through painting at art therapy sessions offered by Pilgrims.
Michel agreed and recognised that – in an age of constant recording on digital devices – it’s important to have tangible things that people leave behind so we can hold them in our hands and truly experience them and remember.
We host Time to Talk community events throughout the year for the general public, aiming to open up the conversation about death and dying; with film screenings, poetry readings and Death Cafes and much more, there’s something for everyone.
